The excitement of finally understanding my children’s unique behaviours and challenges is giving way to a bit of fear and uncertainty as to what, exactly, to do with this information. There’s a saying that has been going around me lately from various wise sources: “A diagnosis is only as good as it is useful”. I’ve been thinking a lot about this as I contemplate what lies ahead for us.
On the one hand getting an official diagnosis seems like opening a box that can never be closed. It’s tempting some days to want to reject it all, to push all thoughts of any “syndrome” out of my head and go back to looking at my children as normal kids who have a few quirks and issues. Life seemed simpler then. This may sound strange, since it’s all a state of mind, but sometimes I miss seeing my children as they were before I found out about all this. Now I have to consciously struggle to do that, and it makes me sad.
On the other hand, I cannot deny what a gift this new information has been for me. Especially when it comes to Daughter. I realize now that I’ve spent so much time in social situations dealing with Son that I have basically left her on her own. I’ve only been attending the “squeaky wheel” moments – if she has an outburst or a loud disagreement with another child. What I’ve been missing is all the countless subtle injuries to her feelings that have arisen almost invisible to anybody else, because the situations that evoke these hurt feelings are innocent and are being misinterpreted by her. A child who finds a hidden treasure first is doing it just to make her feel like a failure. A child who wants to play with a beloved toy is creating strife where none apparently needs to be (if she could just have her way). A child who is a natural leader is a threat to her and is trying to “take her friends away”. The world of social interactions has been, at times, a source of pain and confusion to her and it’s no wonder she has come to avoid certain situations and put up a protective armour of anger and defiance.
Having finally realized this I’ve been making a concerted effort to connect with her and talk about these things. I don’t think I’ve ever let her just “let it all out”. I can’t explain why, except that kids often don’t offer feelings if we don’t create a space for them first, and if we don’t know that those feelings exist we can easily shut them out without knowing. It’s been a crime of ignorance, and I remind myself of all the articles I’ve read that Asperger girls mask and cope pretty well on the surface and can be very hard to detect. I’m trying not to beat myself up over this and instead be thankful that I figured it out when I did.
Now that I’m opening up dialogues with her I’m seeing how wounded she has been, wounds that have likely been festering since she was 3 years old and began to want to interact with other children, only to find it a hurtful and confusing experience. I’m trying not to indulge in guilt. That’s not going to help anybody. Instead I’m resolving to make more time for her, to have more special moments together, and to be everything she needs me to be: a validating and comforting presence in a world that is often confusing and hurtful for her. I need her to know that I am on her side. I force myself to stop with the lectures and instead just validate what she is feeling, and gently let her know that I believe in her ability to overcome these issues.
I’m encouraged by our progress in just a few short days of me consciously connecting with her about these things. A trip to the doctor’s office was met with great resistance and defiance, even though she had known about it for weeks (with regular reminders). Instead of viewing this as an issue of exerting independence I realized it was anxiety. We were then able to deal with the problem and it was no trouble in the end to go.
Today we had a playdate at our home with some new friends. She was angry and defiant about them coming over, saying she hated them, etc. I was able to get her to open up about her feelings. She confessed to feeling “stupid” around the older boy because he is “so smart”. He is so very much like her in so many ways, the “little professor” type. It came out how much weight she puts on being “smart”, how much her confidence depends on being the one who “knows everything”. I asked about the younger girl with whom she has played happily on a couple of occasions. Daughter confessed that it was not so much fun to play with younger kids since they weren’t “at her level”. At the same time, she complains of people wanting to use her toys in ways other than those she has in mind for them. It’s the younger girls who are most likely to play her way and follow her lead. She realized she was stuck in a conundrum. But we made it through the day and in the end she joined us with the other kids and after they left she said “it wasn’t as bad as she thought it would be”. She even said she might like to accept their invitation to come play at their house.
But the night before, watching her dissolve into tears and letting it all out was both a relief and heartbreaking at the same time. I didn’t realize just how much sadness, confusion, and pain my little girl has been carrying around with her in her short life. I was happy that I was finally getting to the heart of these matters, and she seemed relieved to finally be able to talk about them (acknowledge them?). But it was also overwhelming. I have no idea how to deal with some of these issues. But I tell myself I will muddle along by trial and error, the same way I learned how to comfort them as babies, to parent them in all other aspects of their life. I will learn and I will figure out exactly what she needs.
I’m feeling so much love and tenderness for her these days. My heart aches for her and yet I’m so proud of her, too. We’ve always been close and she has always been dependent on me: she still won’t sleep over at anyone’s house without me, and she sometimes dissolves into tears contemplating any future without me there (“I’m never going to leave you, mama. I’ll live with you forever”). I am more frightened than ever about what would happen to her if I were gone. But I have to push those fears aside and take things one day at a time. I feel like we are embarking on a new journey, a new path. It’s scary and encouraging at the same time. I feel a renewed sense of determination. And it feels overall like a positive thing.